I found out that Easter Seals House has WIFI – it just does not work in our room. I can sip my instant Starbucks in the common area on our floor and blog. We are in a transition time now. Ryleigh has been out of the hospital for 24 hours now.
At first she was not to be discharged until Monday, February 4th but they cleared her and needed the bed for another patient. Ryleigh was excited to leave the hospital but sad to leave the wonderful caregivers that have helped her so much. This is a picture of her “favourite” nurse – her name is Mary. She was the nurse who advocated that something serious was wrong with Ryleigh’s leg and urged the doctor to get an ultrasound. She also made sure that Ryleigh was not told too much and seemed to explain things to Ryleigh in such a safe way that her anxiety was reduced. I learned a lot from her.
Ryleigh’s symptoms have left the doctors a little baffled. They seem to think that it is connected to an inflammatory disorder of some kind. It could be a very serious flare of her Irritable Bowel Disease, or IBD with something called vasculitis, or even a blood disorder. We may never know but I am glad she is recovering so well right now.
I am still tentative as I am the only person she to catch any new symptoms. I am a bit hypersensitive but know that I need to be until she is cleared from each of her symptoms: clot is about 3-6 months (second ultra sound in 3 months to see how much of the clot has dissolved, inflammation of her brain (watch for new signs and next MRI in 3 months, IBD (Crohn’s/Colitis) — 7 weeks until off of prednisone and then time will tell if the Remicade has truly worked (3 months or so is my guess).
My biggest concern is bleeding as she is on the blood thinners right now. She has had one nose bleed and I am most concerned about her IBD relapsing and her bleeding internally. That will be a bit trickier to notice but she is aware of telling me if she feels faint or has any other signs.
The goal now is to have Ryleigh try to regain her strength. Right now her hemoglobin has risen thanks to the infusion but it is still very low….her stamina is not the greatest so she needs lots of rest breaks. Yesterday we were out a bit waiting for her prescriptions and she could only take about an hour and then she had to find a place to sit…no lie down….okay sleep. She slept here for over an hour!
Ryleigh has decided that her two favourite restaurants right now are IHOP for breakfast and White Spot for lunch or supper. It is nice because each is only a 10 minute bus ride from Easter Seals House. She gets some exercise and something to eat. Today we had breakfast with my sister Jennifer. Jennifer came from Prince George to keep us company and it was great to spend time with her. Ryleigh loves the White Spot at Oakridge, this her diving into a yummy dish of chicken pot pie …isn’t her smile great!
Tomorrow we are going to ride a bus down to a store where Ryleigh saw a butterfly decorated cane. She is finding her left leg sore and weak and begrudgingly thinks a cane will help her for now. She is embarrassed but thinks in the long run it would be better for her. She is in quite a bit of pain still and finds it hard to walk too far.
We are adjusting to our temporary home. We have a couple of pots and a double burner stove so we can make some food in our little room. The bus is right outside that takes us to many different places if need be. I will try to get Ryleigh out and about to improve her stamina and muscle movement. If anyone in the lower mainland has ideas of places we can go for outings let me know. Right now short transit trips with some walking are all that Ryleigh can do. Much easier to do here then if we were up in Vanderhoof. Although Ryleigh is getting better I have to remember what she has been through the last while. She needs to rest lots and have lots of downtime. I will try my best to rest as well but find that my anxiety is still quite high as I am unsure that everything is better. One of the doctors reminded me that having a chronically ill child means that things do not always get fixed they just become stable. Hmmmm….have to think about that one….whole new understanding our reality.